In the IBD community, this question has been going around and many are responding already. Some are much better at reaching a larger audience. Others may be reaching out to friends and family. IBD is and invisible chronic disease that is difficult for some to talk about.
Yet, the question is what am I doing? Okay. Well then. Here is my list:
- My Blog!! – I have really got to get it together and just start writing. I have lots to say and lots to share. So today begins a new day with new determination.
- Facilitate and promote a growing support group. – I facilitate a group for kids with IBD, and we are growing. More and more people are reaching out and looking for a place where they can be with people who understand what is like to be in the hospital all the time and have crappy procedures and tests. Kids really need this kind of support.
- Irritating my Facebook friends! – Yes. That’s right. Tomorrow will be a barrage of posts all about IBD, what it is, what it isn’t, and how it truly affects people. I expect it is completely possible that I will get a few unlikes tomorrow. Truthfully, I don’t care. This is part of my life. If it is too ugly for someone to handle, there isn’t much I can do about it.
Maybe this isn’t much for World IBD. Maybe I won’t be reaching millions of people tomorrow. But I will do my part to spread awareness about IBD because it is not just a tummy ache.
I have heard so many stories of people’s struggles getting a diagnoses for their Crohn’s or UC. Part of my story is like that too. The biggest difference and biggest problem was that my son’s symptoms were so atypical that no one recognized it for what it was. He started not “feeling well” when he was about 5 years old. He didn’t want to eat and didn’t have a lot of energy. But really not any other symptoms. He did get constipated a lot. I always assumed he would “grow out of it”. This was just a phase he was going through and one day everything would be back to normal. Well, as you can probably guess, normal never happened. By the time he turned 11, he still ate next to nothing, he couldn’t keep up with other kids, he was skin and bones, and his anxiety was off the charts. This was not normal. Something was seriously wrong and none of us could live like this any longer.
Enter the GI doctor, after the initial visit, her best guess was that he had functional bowel disorder, based on the fact that he didn’t have bloody diarrhea. Essentially, it was all in his head. I don’t recall all the first lab testing she did on him, but she scheduled a colonoscopy and endoscopy. Well we received some pretty pictures of his insides that day. My first thought was “no wonder he feels bad all the time”. She told us that based on the photos of the affected areas of the bowel, he probably has Crohn’s disease. At this point I thought to myself, “Isn’t that something old people get?” I knew nothing about this disease. Really didn’t even recognize the name. The biopsies later came back confirming Crohn’s. Our lives completely changed that day. The rules on taking care of my child changed and changed in a way that I had no references for. Everything I thought I should do as a parent was chucked out the window. New standards for living and new expectations were set. When our kid spends so much time in the hospital, our ideals just change.
Fast forwarding to today, after many years of struggle and many different medications, my son is finally in remission. Yes, this is amazing. I count my blessings every day. But does that mean I am no longer a Mother of a Crohnie. Absolutely not. This disease has no cure. Just because he is in remission does that mean I don’t worry? NO! In the back of my mind there is still a space that is occupied with worry and it rears it’s ugly head each time he complains of being ill. Soon he will be an adult with Crohn’s. But I will always be a Mother of a Crohnie.